Friday, June 21, 2013


Surgery NUMBER TEN is HISTORY!!!  And, moreover, so are my bubbles!  At least, we think they are.  Dr. Bauer confirmed that the expanders he removed last Thursday should be my last.  Time will tell, but it was good to hear that after 2 1/2 years of continuous surgeries.

I am doing great, as always, and have since just hours after surgery.  My surgery was at 1:00 p.m. and we were able to leave the hospital later that night.  Indeed, by about 6 p.m. I was asking for pancakes and sausage, and was already saying that I had "no owies."

On Friday, I was a little sore, so we played it low key.  But by Saturday I was raring to go again, and even asking to play on a jungle gym at the Legoland Discovery Center.  Yep, I bounce back nicely, that's for sure.  On Sunday evening I was having fun chasing my sister around the hotel courtyard, and mom had to repeatedly stop me from running!  I'm sure you guessed it -- my activity level hasn't dwindled at all since this surgery.  I still can't sit or bend real well, but I'm taking it easy where that's concerned, and I don't complain about it at all. 

So, where do things stand???  Well I am happy to report that I am about 90-95% Giant Congenital Melanocytic Nevus free.  I will never be entirely nevus free -- I will have satellites, I will have scars, and I will have NCM.  But with my giant nevus practically gone, we pray that the risk of melanoma I was facing has reduced as well.  And we pray that my NCM remains asymptomatic.  With that, I am ready to start living the life that we've dreamed of.

Ok, I'm sure you want to check out Dr. B's handiwork.  So here you go -- the first collage is a picture of me as a baby, before any medical treatment on my nevus, next to a picture of me one day post-op last week.  And the second collage shows a little bit of how the nevus had wrapped around my sides, along with current pictures of how the nevus was removed from the sides. Keep in mind, it took 10 surgeries to get me here.  But it was well worth it!

Yup, we think it looks pretty great.  Spectacular, actually.  We couldn't be happier with the progress here, and with the love, care, and amazing medical treatment I've gotten from Dr. Bauer and his staff.  And for sure, God has had his hands on me, protecting me and producing the results we were hoping for.  Thank you for all of your prayers through this journey.  He is listening!

Are you wondering where we go from here?  Ah, the options.  Option #1 is to stop.  There is little nevus left, and much of it is not visible.  You can see the patch at the top of the buttock, and there is some still in the perineal area as well.  Option #2 is to attempt to wrap this up with one final surgery.  Wanna guess which option we are going for???  Yup, Option #2.  We've come so far, and invested so much, it would be silly to stop now.  Dr. Bauer may not be able to get every last square inch of nevus, but we see no reason not to try.  With the nevus he removes on the skin, he removes the cells below the skin.  And we believe that is where he reduces the melanoma risk.  So, at this point, we look forward to November 22 as my next, and hopefully FINAL surgery.

In about 10 days, I will go into the OR again to have my sutures removed.   For now, my incisions are stable and healing nicely.  There are some indications of stress, but they have yet to split open, unlike they have in the past, and despite my active nature.  We hope they remain intact for the duration of my healing.  We will post an update in a few weeks, when the healing has progressed a bit.

And now it is time to enjoy life.  The way we should be.

Thursday, June 6, 2013

And that's all she wrote...

We did it!  We made it through this round!  Well, technically, there is another week to go, but at this point any complication should not be cause for emergency surgery.  So, we dare say WE DID IT!!!

Mom and dad did my final fill of the round -- and hopefully my final fill ever -- tonight.  We waited a few extra days because these bubbles are pretty tight.  And the fill went about as expected.  Not a lot of volume, but it didn't matter because we had already met the 500cc goal in each expander, so anything more was just good, old-fashioned, scrumptious gravy.  And the final tally: 540cc in my right expander and 570cc in my left.  Well done indeed!!

Yup, I'm a sweetie.  Just hanging out
after my injections with my
all-time favorite possession -
my "Tiggy".
A whoppin' 570cc left and 540 right!

A real 'diaper thong'.  Check this out
Saturday Night Live (circa 2003)!
We leave for Chicago in just 4 days.  The relief is starting to set in.  Dr. Bauer will return from his 5-week vacation on Monday, and then we can definitely breathe a sigh of relief.  One of the thoughts hanging over mom and dad's heads the last few months was 'what if there is an emergency while Dr. B is out of town???'  Well perish the thought!

So this is it.  The time we've been waiting for.  The real deal.  The big one.  Which means, I really need your prayers right now.  This is going to be a rough recovery, ya know, given the location of where Dr. B will be working.  So please pray that I don't get sick between now and surgery, that surgery goes well, that I remain complication free for the remainder of this round, that I don't develop any infection pre or post-surgery, and that my pain is managed.  I am strong, brave, and tough... but I still appreciate the prayers and good thoughts.  My surgery is one week from today, June 13.

We've done our part, and done a good job with it.  I will return to Dr. Bauer with a lot of beautiful new skin.  And that is something he really likes!  We can't wait to see what he does with it.  We pray for God to guide Dr. Bauer's hands, and we pray that we finally, after over 2 1/2 years and ten surgeries, get to hear those three little words: "No more expanders."